Infertility, Ivf

Are we done yet?

When I embarked on this journey, I never would have thought that I….

Wrong!

First of all, I never would have thought I would embark on this journey… Could have never seen this happen to myself, or myself being able to cope with it.

This infertility struggle is hard, unfair and hurts you precisely when you expect it the least. I still to this day wonder how come women who do not have any wish for children find themselves pregnant as soon as they are sneezed upon, while others have to fight for years to an end to achieve a dream that should be their birthright. I certainly asked myself the same question not that many years ago, from a different position-the position of the one getting pregnant on the pill. Little did I know life would soon place me on the other side of the barricade. Not that back then I felt less frustrated, mind you :))

Anyway, the point is that these days I am bitterly celebrating three years in Assisted Reproduction hell. Is it enough? Is it too much? Should I go on? When should we say enough is enough and frankly, ARE WE DONE YET? Cause I would love to make my life again about other things than OPKs, 2WW, BFNs and you name it.

At this point in my life I would have completed (please sit down) 7 IVF cycles, 6 IUI cycles with full IVF protocol, 2 Clomid cycles, 5 Femara cycles, and numerous natural TTC cycles. All those in a 3 years bracket, with all the hope, deception, rage and frustration they brought upon me. My last IVF cycle is barely over, and I am still into my 2WW-so you will say I am jumping the gun and speaking as if I knew this cycle too was doomed. The truth is, at one point it’s getting harder and harder to keep your spirits up, positivity starts to appear silly and at the end of the day it’s probably an instinct, as if to save you from the heartache that invariably follows the broken dream of yet another month passed with nothing to show for it.

For the last couple of cycles I have been telling myself: this one is my last. And yet I would find rays of hope and the courage (or craziness) to try again, for (yet another) last time.

But when do we say “no more”?

Some stop when they run out of funds to finance their journey. This is a very important aspect because infertility is not only heartbreaking and a burden on one’s mind and body, but it also destroys your budget and eats up your savings. For them in this category, the decision is easier made, for once you’re out of cash, there’s no point in asking when to stop, you know you have to do it, and here is your bank account making your decision for you. Frustrating but undebatable.Some stop when they can’t take no for a pregnancy test anymore. Repetitive failures to conceive may dig deep into your self esteem, damaging the zen of your couple and your relationships with other people around you (especially the luckier ones, and especially those who were not even remotely interested in having yet another baby, and keep whining about “these things happening to them”)

Some stop when they realise this hunt for the golden egg takes too hard a toll on their marriage. Because this is another taboo people usually do not wish to discuss: a process supposed to bring a couple together gets people apart. Intimacy is lost, desire diminishes, pressure builds up, and what was supposed to be an act of love in the pursuit of the fruit of love itself, becomes-let’s face it-a fixed schedule of lovemaking, timed by hormone levels and subcutaneous shots. And this is hard. What may start as being funny (we have to have sex NOW, I have a positive OPK) becomes a self imposed task a couple of cycles later. You eventually begin to forget yourself as a couple, and your sex life starts to be measured in ovulation tests, sperm morphology counts and number of follicles retrieved. And that’s harsh!

We are not trained for that, we grow up being told getting pregnant is easy peasy, why… everyone gets pregnant, especially when they don’t want to, so when it doesn’t happen for us, and we have to fight for it and pay for it too, it appears unfair and frustrating.

I know for me this is my last time doing IVF. Luckily it is not a matter of money, French basic insurance covers fertility treatments, or I would have never been able to have so many cycles so far. For me, having previously been confronted with loss and mourning, this infertility journey had me passing through all the stages of grieving, once more.

First, I was shocked. By shocked I mean I cried for two days in a row and lost a few pounds in the process. Don’t laugh at me, but this actually happened when I found out my AMH was 0.2….Now I know better but back then I was a sucker :))

Then, I was very excited for my first cycle, and perfectly sure it would work. How many times have you been told “never mind if you don’t get pregnant, you can have IVF”? Exactly! People outside this journey believe IVF is THE golden solution and it is infallible. Meh…Anger hit me hard when my first cycle failed. I was angry at my body, angry at my age, angry at the timing, angry at all pregnant women, angry at God. As if the whole Universe was against me.

A few failed cycles later anger left place to depression. I wouldn’t say I was depressed in the medical sense of the word, for I never needed medical assistance for it. But I guess I was this close…

And then a sort of shell built around me, and I became numb. I lost my positivity, for frankly how many times in a row can you fool yourself that this time is gonna be the good one? And I became convinced that it will never happen to me. And I didn’t care anymore. I mean I would do everything that needed to be done, like a robot, like a little infertility soldier heading towards another defeat.

Emotionally, I am sorry to report, I am still there. Numb, indifferent, unable to care anymore. But this time the little soldier lost its dedication. This time I surrender and I am neither ashamed nor do I feel guilty. I did my part, we both did our best. We have been together in this journey and we have supported each other but it is time for us to find ourselves again. If the Universe cares to surprise us with a (natural) miracle, we won’t say no to it 🙂 And if it’s not meant to happen for us, we surely will find other ways to grow together and love each other and enjoy what we have including those two wonderful children of mine that he adopted and loves as his own flesh and blood.

He deserved more, and I will forever be bitter about not being able to offer it to him. But I believe there are stronger forces than us up there, and they may know better than we do. And that what is meant to happen, will eventually happen.

For once I give up control, and boy do I feel free 🙂

Love and peace and baby dust to you all ❤

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Ivf

Low dose vs High dose stims-what is the best approach for DOR and does it really make a difference?

In the Facebook groups I am an administrator of (the Low AMH, the TTC over 35 and the TTC over 40) not one week passes without someone complaining a high dose stimulation cycle failed her and she was directed towards donor eggs.

Obviously, it comes a time in the fertile life of every woman, when her eggs will no longer be good. And when the body really can’t deliver anymore, the science can’t do much about it. But until this happens, the vast majority of women I come into contact with (virtually) prefer to exhaust every possibility of using their own eggs.

As I have mentioned it before, and many of you already know first hand, IVF works by narrowing down the chances to finding the better egg. This being said, the more eggs you produce, the better chances you have for success. This is why some clinics turn off clients with low AMH and diminished ovarian reserve, for fear this clients won’t be able to respond well enough to treatments, to produce enough eggs to ensure a positive outcome-this resulting in negatively affecting their success rates. Those clinics will probably serve you the donor egg speech even without considering treating you.

There are of course other clinics, the majority of them actually, who really believe they can do well, and take you in. They treat you just like they treat their “fertile”patients (let us not forget for a moment that IVF was initially conceived to overcome male fertility issues and tubal problems) and therefore they try to make you produce as many eggs as possible, cause the more eggs the merrier with IVF, right?

Even more than that, they will have the tendency to give you higher doses then they use for their “fertile” patients, because they know your DOR makes your ovaries pretty lazy, and they believe higher doses of stims compensate for your ovaries’ lack of reactivity. This was indeed the approach several years ago. Since then, lots of studies have been performed and facts have proven otherwise.

What I am going to tell you next, is my own personal experience…

I started my IVF adventure in March 2014, on my 40’th anniversary. My RE was one of the most appreciated REs at the American Hospital in Paris, and I just loved his calm and poise, and the patience with which he answered all our questions. All my tests were perfect, except for my AMH who came back at 0.5 only to throw me into a black despair. Little did I know about AMH  back then, or that I shouldn’t pay too much attention to it. I had gotten pregnant precisely 10 months ago, naturally, like I always did, on the first month trying. Unfortunately and very unfairly if I may say so, I lost our little boy at 16 weeks because of an incompetent cervix (that I later corrected through surgery in USA).

My RE told me the same story most of your REs tell you: your AMH is low, we have to be pretty agressive in order to make the most of these ovaries of yours….He started me on an agonist, a French kind of Lupron, and high doses of Gonal-450 if I recall well. My AFC was (and still is to this day, 3 years later) between 9 and 11 on CD3. As the days went by and my retrieval approached, I could see my follicles disappearing: 11 became 8, then 6, then 4…eventually that cycle we got 3 eggs…To say I was disappointed would be a huge understatement. We converted to IUI and when I asked him what the heckity heck happened, he shrugged and told me morosely: “Your AMH is 0.5, what did you expect?” Yeah, I wanted to kick him…

But I didn’t, and when I got a BFN, I went to see him again, and I asked him how did he prefer to proceed for the next cycle? Should we try an antagonist protocol? (You see, in the meantime I had discovered fertility groups, I started to read studies, articles, and educate myself-my journalistic self forbad me to act like sheep and pushed me into finding out the “truth”, my truth.) He replied contemptuously “Oh, but the antagonist protocol is such a bullshit, I don’t believe in it, I only do this protocol and it works so well for my patients”. I knew then it was time for us to part…I don’t believe in making the same mistake twice, on purpose. And I left…

For another famous French clinic, a public one this time. Horrible conditions (you, my American readers won’t understand this but believe me-horrible conditions, lol) fantastic doctor. I was pretty impressed by his CV until he told me “You are in the best hands, I am the best in France, you will NE-VER find another RE better than me in this country”…..ughhhhhhhhhhhhhh…ok………But I stayed…4 IVF (high dose and local anaesthesia only for retrieval) and 1 IUI later, still BFN, not even a chemical. I would like to give him this though: he tried! He changed protocols every cycle. We did Gonal, Pergoveris, Menopur, Puregon. We did testosterone priming (the worst for me, 2 AFC instead of my usual over 9) estrogen priming (he was the first RE  to ever use this protocol, he invented it)….We did everything!!! The only thing we didn’t do was low dose. Whatever he did, I was on 450 FSH and some 150 LH and the best results I ever got with him were 3 lousy eggs, with a 100% fertilisation rate, giving me 3 lousy embryos. One day, I went to see him and I told him I am willing to leave him and go to London to a clinic I have heard did low dose IF he didn’t accept to do the low dose protocol another RE in NY gave me over the phone, after having sent her all my medical records. He said sure, sure, we will do whatever you want, just know that this protocol is “counterproductive” and you will never get more eggs than that. He therefore prescribed me the usual 450 Puregon and the 150 Menopur the freaking same protocol we had done the previous month. I just couldn’t try to reason him anymore, so I left.

I went back to my obgyn and we did the low dose protocol – IUI, bam, 5 follicles.  It was a huge surprise for both of us. She considered that I respond too well and in case I wanted to do another cycle (that IUI cycle was still BFN) I would be better off doing IVF. She spoke to my first RE and she asked him would he accept performing IVF with my protocol  next time? He said yes! We did it in April and we got….8 eggs. 6 fertilised, 4 embryos, 3 were pretty poor quality and were transferred on day 3, and one was kept growing but it arrested later that day.

BFN yet again. But my actual (and ex first RE, lol) changed the tune. He was so super amazed by the wonders this low dose protocol did for me, that he wrote it down. Where he once told me my AMH was so low I had nothing to hope for, now he is very optimistic we can make this work and it is worth trying despite me being 43 now. He put me on Inositol (I am also taking Ubiquinol, Vitamin D, Folic Acid, Zinc and L Arginine) and he wants me to try again in September, to see if over 3 months of supplements intake managed to positively impact the quality of my embryos. Which is exactly what we will do.

This journey, as well as the experiences of so many of you out there who did much better on low dose (or even natural IVF cycles) made me think of a comparison between cars. Take a Lamborghini and a Fiat 500. Both brand new. The Lamborghini can go up to 200 miles per hour, The Fiat only to 120 per hour. If you push the pedal of the Lamborghini you can definitely make it ride up to 200 miles per hour, and she will. But there is no point pushing the pedal of the Fiat to try and make it ride at 200 miles per hour too. She won’t be able to. Because all she can do is 120. And forcing her to go to 200 won’t actually make her go to 200. But what can happen is she can break. It’s the same for us. Pushing huge doses of stims into ovaries able to produce a certain quantity of eggs  won’t necessarily make them produce more eggs. Hence the “bad response” we hear about all the time. More often than not, DOR patients see their ovaries block and don’t function ok on high stims. While a gentler approach, a milder stimulation, gives them better results.

This has not been discovered only by us, patients, but it has become a trend lately in the medical world. Studies have been performed that have proven mild stimulation and in some cases even natural IVF (that is no stims at all, just one egg retrieved) work better for DOR patients, aka “bad responders”. Some REs will tell you live pregnancy rates are low for natural and low dose IVF – and they are, when you compare them to the high rates of normal responders. But when you compare them to the results bad responders have after failing cycles on high doses, you will find that something is still better than  nothing. There are more and more clinics offering this low dose approach. One of them is CreateHealth in London who exclusively treats patients with diminished ovarian reserve. There are others too, and if you have come across one, I would ask you to comment with the name and location, in order to help other ladies.

Whatever protocol you and your RE choose, just keep in mind that IVF is really trial and error. It is pretty rare for an IVF patient to be successful on the first cycle, and this is even truer in the case of  poor responders. Therefore, if your first IVF cycle fails, do not despair. Chances are you will have learned a lesson and you will know what and how to do better next time. And know that unless you try, you cannot really know how you will respond, either to low doses or high doses. The most important thing is to have the luck to come across a doctor who knows DOR, who is familiar with both approaches not only the aggressive one, and who is willing to work with and for you, to get you the best outcome. And that would be a baby 🙂

Meanwhile, you might want to take a look at these recent studies, giving hope to us, poor responders who might want to use the milder approach versus the aggressive one.

Comparison of IVF Outcomes between Minimal Stimulation and High-Dose Stimulation for Patients with Poor Ovarian Reserve

https://www.hindawi.com/journals/ijrmed/2014/581451/

 

Natural IVF cycles may be desirable for women with repeated failures by stimulated IVF cycles

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2582079/

SOURCES: http://www.hindawi.com. http://www.ncbi.nlmh.nih.gov

 

Infertility, Ivf

How many eggs are not enough?

There has been a question asked very often on IVF with DOR pages: how many eggs are needed for ivf and what is the inferior limit?
One of the big paradoxes of this DOR/IVF thing is this one: most of the RE’s recommend DOR/POF patients to hurry and do IVF cause “they are running out of time (and eggs)”
The RE’s also say that for IVF to be successful, the more eggs, the better.
We all know (personal experience mostly) that DOR/POF patients have anything BUT many eggs.
So how do you marry DOR and IVF with the “many eggs needed” approach?
Well, you don’t!
Unfortunately medically assisted procreation has become more and more of a business lately.
What started out as a genuine desire to help infertile couples procreate, turned into the rush for the golden egg in the eyes of fertility clinics that are being more and more numerous, some offering bargain packages that would make Walmart and Costco green with envy.
Patients are put on birth control so that they all fit in the same batch, they all have their periods and stimulation schedules coordinated
It has turned into a huge business bringing millions and millions in for clinics
Do we as patients benefit in the end?
Sometimes we do, and when we get to hold our miracle babies we would forget all the bad and focus on our success
But what happens with the ones that don’t fit?
Clinics mostly focus on success rates, cause that’s what brings in the cash. And more patients.
Therefore they cherish the convenient patient the most: and that would be the youngish couple with male fertility issues, the patient with bad or no tubes, the pcos patient…
And what about us? The DOR, the POF, the over 40 patient?
We can’t be put on birth control cause it’s suppressive, we don’t fit in batches cause our periods are irregular, our FSH is high, our response to meds is under average and we certainly don’t raise the success rates of any clinic with our 2-3 eggs retrieved…
Heck, some clinics don’t even let us get to their door, we are being served the donor egg speech over the phone and told that an AFC of less than 4 is Grandma style so… bye Felicia…
And that’s why I am focusing on empowering women to stand up for their rights and ask for what they truly deserve: a tailored made medical approach.
When you buy shoes, you don’t go in a shoe shop that sells only size 7 shoes, cause you might be wearing a 5, an 8 or even a 10!
You won’t buy size 7 shoes if you’re wearing a 9, right? You pay for them, you might as well get some shoes that fit you well!
Do you pay the RE?! Oh hell yes!
Do you have to accept whatever the RE serves you, without the right to ask for something else, or to go somewhere else to someone who cares to work for and with you!?
No way!
That’s why I encourage ladies in my FB groups to keep up looking for THE good RE, the one who is less interested by the stats, and more interested in giving them what they need and want.
There are doctors like this out there, ladies!
Some of us have been lucky to have found them, although more often than not, not from the first try 🙂
There are the doctors who don’t choose their patients based on the number of eggs they produce.
The ones that give DOR a chance.
The ones that are not afraid of low stims and natural IVF, the ones that retrieve two eggs, or maybe just one, without adding frustration upon frustration on a woman already having to deal with the disappointment of not being able to get pregnant in the first place.
So to answer the question: what is the inferior limit for ivf and how many eggs do we have to have?
Well … certainly 15 eggs have a better chance of success than 1 egg only, it’s a matter of numbers and of narrowing down the chances to the best one.
But that doesn’t mean that 1 egg shouldn’t get the opportunity of a chance!
Of course that with one egg chances are about the same as with iui, but let’s not forget iui is not always an option, and for couples who absolutely need ivf, one egg should be given just about the same credit as more eggs.
We should all be given our chance, and the right to follow our dreams 🙂